The Right to Live

Yesterday I wrote about how I signed a DNR order for my mother and then experienced some difficulty getting doctors to respect its reversal. Today I’m going to continue that discussion and take a look at the Liverpool Care Pathway. The LCP is an eponymous care-withdrawal protocol; doctors in the UK use it with terminally ill patients.

After the DNR was reversed, I encountered a lot of passive-resistance at my mother’s acute-care hospital. Staff became scarce and I suspected a lot of foot-dragging was going on. When my mother developed pulmonary embolisms, a few days after her stroke, I was told she had about 24 hours to live. Pulmonary embolisms are blood clots that form in a patient’s lungs; the danger associated with them is described on Medscape:

Pulmonary embolism is a common and potentially lethal condition. Most patients who succumb to pulmonary embolism do so within the first few hours of the event. Despite diagnostic advances, delays in pulmonary embolism diagnosis are common and represent an important issue. As a cause of sudden death, massive pulmonary embolism is second only to sudden cardiac death.

Pulmonary embolisms are like snowballs rolling down a hill: they just keep growing. An infection in another part of the body is what provides the embolisms in the lungs with the material that causes them to grow. As blood circulates, smaller clots from the infection join those bigger, deadlier ones, and eventually patients’ airways are cut off. In my mother’s case, her gangrenous leg was the source.

For those of you who don’t know, gangrene is extremely painful and consequently is very difficult to ignore. In the weeks leading up to her hospitalization, my mother told me about her frequent visits to various doctor’s offices and walk-in clinics. It would be fair to say she sought help almost daily for two months, and so I had a hard time understanding why it took so long for her to be diagnosed properly. When that did happen, it was weeks before she was hospitalized. I also couldn’t understand why an important appointment, after her diagnosis, had been cancelled and then rescheduled much later.

When I tried to talk to the various doctors she’d seen, I was stonewalled. No one could give me a satisfactory explanation for what amounted to an inexplicable chain of delays and postponements. Instead they pointed to my mother’s age and suggested she’d probably been shy about asking for help because “old people don’t like to make trouble.” When I countered that my mother was an assertive 77 year-old who went to the gym everyday, they shook their heads or shrugged their shoulders. It became a habitual response: blame was routinely redirected back at her. Occasionally and more sinisterly, it was redirected back at me. I would be asked why it had taken me so long to come to her aid.

So like Diana Ford,*** I found myself in an adversarial situation at a time when I was already managing a shifting and unstable set of problems. Dealing with the bigger picture – taking in the accumulation of poor decisions made by various doctors – was something I was actively discouraged from doing.

(I’ve written about this at length in another article of mine “Hospitals, Shame and Vulnerability.” Here is the link for that article: http://ireneogrizek.ca/2012/07/10/hospitals-shame-and-vulnerability/ )

I mention my mother’s pulmonary embolisms because I became suspicious when I saw how that crisis was being handled. More specifically, I was not told why the radiologist, who was meant to install a venous filter in my mother’s infected leg, had scheduled my mother at the end of the next day, rather than at the beginning. Radiologists are doctors who read x-rays. They can also, if they are interventionist radiologists, perform procedures like installing filters in patients’ veins. This particular filter would prevent the micro-embolisms from my mother’s infected leg from attaching themselves to the larger embolisms in her lungs. The filter would save her life.

Imagine my agony as I watched hours tick by and saw other patients, who turned up for non-emergency x-rays, going ahead of her. It was only when I truly lost it – in a fit of profanity-laced behaviour I hope to never repeat again – that the hospitalist on duty took action. By my reckoning, my mother had the procedure a full 30 hours later, six hours longer than she was expected to live. That doctors were hoping she would die in the meantime does not seem farfetched. Whether by accident or design, the poorly managed timing of that procedure points to an ominous fact: some healthcare professionals are just plain menaces to society when it comes to treating the elderly.

So Ford’s contention that “her father’s case highlights a dark truth: that elderly hospital patients are not offered the same level of care as younger ones,” rings true to me. The inexplicable delays, the redirected blame, the oft-repeated theme of “old people don’t like to make trouble,” all frustrated me in the extreme. I often joked I’d be willing to fork over a month’s pay just to find someone in the hospital willing to tell me the truth. Instead, I was fed a steady diet of barely digestable pap.

Now I’d like to turn my attention to the Liverpool Care Pathway.

This care-withdrawal protocol first came to my attention when I stumbled across an article about Professor Patrick Pullicino, “a consultant neurologist who raised concerns that euthanasia had become a ‘standard way of dying’ on the National Health System.”  His concerns echo those of Dr. Margaret Cottle, the Canadian Palliative Care doctor whose video I included in Part 1 of this series. The article about Pullicino appeared in the October 26, 2012, Mail Online and details the controversy.

NHS doctors are prematurely ending the lives of thousands of elderly hospital patients because they are difficult to manage or to free up beds, a senior consultant claimed yesterday. Professor Patrick Pullicino said doctors had turned the use of a controversial ‘death pathway’ into the equivalent of euthanasia of the elderly.He claimed there was often a lack of clear evidence for initiating the Liverpool Care Pathway, a method of looking after terminally ill patients that is used in hospitals across the country. It is designed to come into force when doctors believe it is impossible for a patient to recover and death is imminent.

There are around 450,000 deaths in Britain each year of people who are in hospital or under NHS care. Around 29 per cent – 130,000 – are of patients who were on the LCP. Professor Pullicino claimed that far too often elderly patients who could live longer are placed on the LCP and it had now become an ‘assisted death pathway rather than a care pathway’.

What is most disturbing is that the protocol is supported and sanctioned by many healthcare bodies in the UK. In another Mail Online article by the same reporter, Steve Doughty, he makes it clear it was patients’ families who raised the initial alarm. Doctors who agreed with the families were outnumbered by those who continued to support the LCP. Doughty reports that:

Several families have been shocked to find that their loved ones have been put on the pathway – which involves the withdrawal of food and fluids as well as medical treatment – without their consent. The average lifespan of a patient on the pathway is 29 hours. Yet, some patients who were taken off the pathway at the insistence of their relatives have lived for several months.

It is only recently that the APM, the Association for Palliative Medicine in the UK, has broken “ranks with the public stand of other medical bodies, who continue to give the pathway full support.” The APM did this because of the number of complaints they received from families of the terminally ill. In other words, it is the families who are now trying to regain some semblance of control when it comes to deciding the fates of their loved ones. This outcry should be ringing alarm bells on this side of the Atlantic; I hope our Supreme Court judges are listening.

The Mail Online, as well as other new outlets, has been criticized for sensationalizing the controversy surrounding the LCP, and for needlessly spreading fear about a way of dying that provides some dignity for the terminally ill. I’m not sure I agree and I’ll be discussing that in Part 3.

Here is the link for Part 3: http://ireneogrizek.ca/2012/12/28/5762-the-right-to-choose-life-or-death/

***I discuss Diana Ford’s struggle to save her father in “The Right to Die,” the article right before this one. Here is the link:  http://ireneogrizek.ca/2012/12/26/the-right-to-die/